The role of head and neck cancer advocacy organizations during the COVID-19 pandemic

Flora Yan; Erika Rauscher; Amanda Hollinger; Mary Ann Caputo; John Ready; Carole Fakhry; Cherie-Ann O Nathan; Chris Leonardis; Danielle Yearout; Terance T Tsue; Terry A Day; Michael G Moore

doi:10.1002/hed.26287

The role of head and neck cancer advocacy organizations during the COVID-19 pandemic

Head Neck. 2020 Jul;42(7):1526-1532. doi: 10.1002/hed.26287. Epub 2020 May 29.

Authors

Affiliations

¹ Medical University of South Carolina, Charleston, South Carolina, USA.
² The Thyroid and Head and Neck Cancer Foundation, New York, New York, USA.
³ The Head and Neck Cancer Alliance, Charleston, South Carolina, USA.
⁴ Support for People with Oral and Head and Neck Cancer, Locust Valley, New York, USA.
⁵ Foundation for Voice Restoration, Greenville, California, USA.
⁶ Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins School of Medicine, Baltimore, Maryland, USA.
⁷ Department of Otolaryngology-Head and Neck Surgery, Louisiana State University Health Sciences Center, Shreveport, Louisiana, USA.
⁸ The Head and Neck Cancer Living Foundation, Overland Park, Kansas, USA.
⁹ Department of Otolaryngology-Head and Neck Surgery, University of Kansas School of Medicine, Kansas City, Missouri, USA.
¹⁰ Department of Otolaryngology-Head and Neck Surgery, Medical University of South Carolina, Charleston, South Carolina, USA.
¹¹ Department of Otolaryngology-Head and Neck Surgery, Indiana University School of Medicine, Indianapolis, Indiana, USA.

Abstract

The COVID-19 pandemic has had a significant impact on many aspects of head and neck cancer (HNC) care. The uncertainty and stress resulting from these changes has led many patients and caregivers to turn to HNC advocacy groups for guidance and support. Here we outline some of the issues being faced by patients with HNC during the current crisis and provide examples of programs being developed by advocacy groups to address them. We also highlight the increased utilization of these organizations that has been observed as well as some of the challenges being faced by these not-for-profit groups as they work to serve the head and neck community.

Keywords: COVID-19; head and neck advocacy; head and neck cancer support; not-for-profit.

MeSH terms

Betacoronavirus*
COVID-19
Congresses as Topic
Coronavirus Infections / epidemiology*
Foundations*
Head and Neck Neoplasms*
Humans
Organizations, Nonprofit*
Pandemics
Patient Advocacy
Patient Education as Topic
Pneumonia, Viral / epidemiology*
SARS-CoV-2
Social Media
Telemedicine